Sunday, 13 December 2015

New diagnosis

I am just going to say it outright: I have Crohn's disease.

Now, before you get all panicky, hear me out.
I've been walking around for many years with bowel problems now. Doctors didn't take me seriously. Some tests were done, but never proper tests by specialists, so nothing specific came forward and my pediatrician wouldn't do any more tests or refer me to a specialist, even though the problems never fully disappeared. They only flared up every once in a while.

That is, until last year. Suddenly I had 6 stomach flues in 9 months and after that all my symptoms worsened. In hindsight I'm guessing the stress from the unfitting coaching and training caused Crohn's to flare up.

I had several visits to my pediatrician, until she finally referred me to a specialist (to check me out. Not 'cause she suspected anything specific). This specialist soon had a suspicion, which thorough testing and a colonoscopy confirmed: Crohn's disease.

But my response was mostly (not a 100%, I did have a few tears at some point) one of relief. This surprised many people and had some even question if I even understand the nature of the disease. So I'll explain myself.

Yes, I do understand the nature of the disease. I've been told by the doctor that I have only 2 inflamed spots, no blockades, cysts or other such things. This makes it mild at the moment.
The doctor told me that if the medicine catches on (we'll see in time), he expects I'll be with minimum symptoms and I can switch to a medicine meant to simply maintain it.

Seeing as I first had a diagnosis (chronic fatigue) that simply meant "We have no idea what it is, or where it came from, or what to do about it. Just accept it." and now I have a diagnosis that goes "We have no idea where it came from or what it might do in the future, but we know exactly what it is and we got many possible treatments" I actually feel like I made a step up!

Ok, now for the serious, darker part. I read online that 3 out of 4 Crohn's patients need bowel surgery at some point. This scared me and is what caused the tears at some point. I started doubting if I was indeed taking this too lightly and asked about this on a Facebook group for patients with Crohn's disease. They said I was right to be happy about having a diagnosis and having it be mild. They did also say that Crohn's disease is different for everyone and can just randomly turn around at some point. But when and if this moment is ever to happen, nobody knows.

They say that some people with mild Crohn's live their lives almost symptom free, and others feel fine one day, and suddenly need to be taken to the hospital the next. And everything in between.

They said that because the future for Crohn's disease is so unpredictable, I might as well enjoy it while I still have mild Crohn's disease and not worry about the future too much.

This is why I'm mostly relieved. No, I'm not without grieve. The possibility of bowel surgeries in the future does scare the heck out of me. But I can't just focus on that, as it will absolutely destroy my life. So instead I focus on what is now. And what is now?

Now I have a diagnosis AND treatment AND a possible future with minimum symptoms, where first none of these things even existed.

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